[GIJane72]

#1059059

First, let me just apologize for what I know is going to be a long rant. I desperately need to unload my frustrations and it feels like this is the best place.

I was officially diagnosed with Grave’s Disease in May 2011. The doctor told me that my numbers were the worst he’d seen in his entire career. My symptoms indicated that I had been suffering with symptoms for over ten years. My Dad also had Grave’s Disease and his was caught very late. He had his Thyroid removed and, shortly after, was diagnosed with Leukemia. He died nine months later. My symptoms started around that time. I’m sure the stress masked them.

I’m ADHD and take amphetamines so my doctor always told me that my high heart rate was due to the meds. As far as all the sweating was concerned? He said that was due to my metabolism going high from the meds, as well. I left his practice shortly after that.

Fastforward a few years. I get pregnant with my daughter and all of the symptoms are said to be related to my pregnancy. I tried to believe that. My pregnancy was extremely hard and I was in the hospital numerous times for dehydration.

After this, I lose my medical insurance and cannot afford my ADHD meds. My symptoms seem to subside for a short time but won’t go away.

It’s now been seven years and I have medical insurance again. I ask my new doctor to do a full workup and find out that I do have Graves Disease. I’m not surprised but, I’m very concerned. The doctor tells me that I could have had a heart attack because my heart rate and blood pressure are through the roof. He puts me on a high dose of Tapazol and throws me into Hypo where my numbers drop to the lowest he’s ever seen. I ask him if I should see an Endocrinologist and he’s says that he’s comfortable handling my meds.

It’s been a year now and the meds have sent me back and forth between hypo and hyper. I’m so frustrated! I drive a school bus and have been pulled from driving numerous times because of dehydration. I’ve had heat stroke several times and feel miserable.

I finally had enough and told my MD that I was going to an Endocrinologist. My appointment was yesterday and I was told that I need to have the thyroid surgery.

My step-dad passed away a few months ago so my mother is living with us for a while. Its been nuts. She’s ADHD unmedicated and forgets whats going on with me. The house is a wreck and nobody wants to help clean it. If there’s a bad symptom of Graves…I’ve got it! My Mom unintentionally makes me feel so guilty because I have no energy to do anything. I’m made to feel lazy for not cleaning or cooking. My husband is extremely understanding and tries to do everything. To make matters worse, I have disc disease in the lumbar section and recently damaged the discs in my neck while cutting down a hedge. I feel like I’m falling apart.

If you’re still reading this…thanks for sticking with it. I feel like I’m going to lose my mind and nobody really understands how I’m feeling except for the people on this board.

[Bobbi]

#1171866

Hi, and welcome to our board.

It is truly appalling that you have been suffering for so long, untreated. And one thing you must keep in mind, as you go forward, is that it takes time at normal levels of thyroid hormone for your body to heal from being hyperthyroid. The longer we are hyper, the longer that healing time can take. So do not expect to feel well right away, even if your numbers stay controlled in the normal zone. I think of it in terms of hurricane winds. (I live in hurricane country part of the year.) Hyperthyroidism is like a metabolic hurricane. And just getting rid of the winds does not mean that things are instantly back to normal. It takes time to rebuild communities, and it takes time for the body to rebuild. But we can get there most of the time — back to feeling normal.

While the antithyroid drugs like Tapazole typically work well to interfere with the body’s production of thyroid hormone, there is a balancing act involved in making sure that we are on the proper dose of it. Antibody action can cause our bodies to need higher, or lower, amounts over time. So one dose does not necessarily work forever, and dose changes need to be taken into account. We can move between hyper and hypo, through no fault of our doctors.

That will also hold true if you have thyroid surgery, and are placed on replacement hormone. Your body might need more, or less, of the replacement from time to time. It’s important for our blood levels to be monitored at appropriate intervals. Typically, while we are being first treated (by either antithyroid meds or replacement hormone) we have to get blood tests every two or three months. Once a more stable level has been achieved, blood tests once a year might be the appropriate spacing. But we will ALWAYS need to be monitored. So, going forward, pay attention to getting your levels checked when you feel “off.”

Try, also, to make adjustments with how frequently you drink water. If you are experiencing frequent periods of dehydration, you need to carry a water bottle with you. And use it.

One thing to keep in mind in the face of criticism from family and friends, is that we need to be our own BEST friend while we are sick with wonky thyroid levels. Once we are well again, OK. We can listen to their comments. But while you are sick, treat yourself the way you would advise your best friend to be treated, if he/she were feeling the way you do. We are sometimes our own worst critics — but we need to cut ourselves some slack until we get back to controlled, normal levels of hormone.

I do hope you are feeling better soon.

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